There are many things I love about winter: morning snow glistening on trees, hot chocolate with marshmallows, watching Mya jump off mountains of snow, scarves, knit hats, and pink gloves on adorable tiny fingers. With the arrival of the snow brings my least favorite part about this season, sickness. I hate runny noses and sore throats, flu shots and hand sanitizer. And I hate that during fall and winter months Ellie has to get an RSV shot every month. Respiratory Syncytial Virus (RSV) is a virus that can cause wheezing and difficulty with breathing. There is a medicine called Synagis which can decrease the chance of someone developing a severe form of this virus. It is recommended that certain premature babies, children under the age of two with Down Syndrome, some types of congenital heart disease and chronic lung disease, receive this medication. The medicine is given monthly from November to March, it is injected in both of Ellie’s thighs. The fear of illnesses such as these having such an extreme impact on children with compromised immune systems, such as Ellie, gives a shadow of fear that lives within my mind during winter. It isn’t all encompassing, but it’s a fear that sneaks up on me when I hear children coughing in the grocery store or seeing Mya’s friends with runny noses.
Today in the middle of a snow storm we trucked over to the hospital to get her first injections of the season. As we arrived in the clinic I looked at my brave girl, who was already feeling suspicious. As I waited in the clinic, my face gleamed at the site of a familiar face. The nurse administering the RSV shots this year is an old friend from the NICU. As Ellie was first taken to the NICU after she was born, a series of blurry moments follow, looking back they look more like snapshots than a series of events. I saw her in the NICU that first night, sleeping peacefully in her isolette. I couldn’t hold her that first night so she could get all the oxygen she needed. That night I laid in my hospital bed feeling a million miles from Ellie trying to process everything that was happening. Once the sun shone through the window of my hospital room I raced as fast as I could to the NICU with hopes of holding my baby girl. I walked in, eyes red from crying and exhaustion, still in my pajamas, and met our nurse for the day. Her name was Megan and she introduced me to the world of the NICU. She explained all the machines, she told me about Ellie’s progress, and she brought me a rocking chair, and gently placed my baby girl in my arms. I was nervous and scared, bewildered and out of place, but in that moment she felt more like a friend than a nurse I had just met. She took one of the first pictures I have of Ellie and I, sitting in that rocking chair, on that first day. The rest of that day my brain was filled with information. That afternoon, when Travis was home with Mya, I found out that Ellie was most likely born with a heart defect. I had been so strong all day, so hopeful. But I distinctly remember standing next to Ellie in her isolette as they told me. The world suddenly closed around me and I started crying. My whole life felt broken and Travis and Mya were gone. Megan turned to me, and hugged me, and told me it was okay to cry, that she knew I felt like I had just been kicked a million times. I will forever be grateful to her for that hug and for those words. As the days in the NICU progressed, Megan was our nurse many more times. She rode with us in the ambulance to Ellie’s first echo cardiogram which confirmed her defect. We didn’t have a babysitter for Mya for the appointment so when the cardiologist told us what her defect was, Megan took Mya on a walk. When I came by the NICU for the night feeding, after putting Mya to bed, I would find Ellie in Megan’s arms. Knowing that when I couldn’t be there, Ellie had love, helped me sleep at night. I think about Megan a lot, how she saw me at my weakness moments, how she fought for Ellie, how she taught me the best way to care for her. And as we saw Megan today, administering Ellie’s RSV shot, I felt the momentous distance between then and now. She held Ellie and hugged her and hugged me and I felt so proud of how far we’ve come. How wonderful to have such important people in your path of life, and how amazing to see them again when you’ve made it out of the darkness.
I’m lucky for so many reasons. For a child who is easily calmed after a painful injection, for long hugs with my brave girl, for knowing what to be afraid of and how to help, for doctors who do research for kids like Ellie, for surprising friendships, for the kindness and love of NICU nurses, and as always, for a family who laughs so often and so loudly it can muffle my fears.